Topiramate, Day 1

After my frustrated post and seemingly unprovoked seizure on the weekend, I decided I needed to talk to my neuro sooner than May. Called the office (again... third time since December...) and they again told me they cannot get me in any sooner, and that I'm still on the cancellation list. I said that I'm not going to make it until May, my meds are not working, and I need something now. I asked if I should go to the hospital and see a neuro there; the receptionist said yes, if I can't wait, to go to the hospital.

Given that VGH is the best hospital in town and that they have (had?) an epilepsy clinic on site, I figured if I was going to go to an ER, it may as well be that one. So I took a book and my phone charger and headed for VGH. Sat in the outer waiting room, then the inner waiting room, then was moved in to a bed with a curtain, and waited... finally a doctor came to talk to me. I told him why I was there... that my meds aren't working, I'm still having seizures, I'm still getting severe depression, and that my own neuro won't see me any sooner than May. He said that usually if you have a neurologist then the ER ones won't see you, but he agreed that it sounded like a legit case, so he'd call over. I waited some more. Finally a neurologist came to see me (a woman!). She was really nice and was the first neurologist I've met who was actually curious about my experiences with my partials and generalized seizures. She asked lots of questions about what they feel like, my triggers, my meds, etc. She ran through the regular neuro tests, checked my eyes (said I have "beautiful pupils"). She asked me more questions in that one visit than my own neuro has EVER asked me. She agreed that it was good that I came in, and said she would check with her supervisor about changing my meds. Then she disappeared for so long that I thought she had forgotten about me. I waited and waited, and finally she returned... with three other neurologists! One was clearly the boss, and the others seemed to be in training. He ran through a lot of the same questions again.

Then he started talking about adding another medication to the Levetiracetam that I'm already taking. At first he suggested Valproic Acid, which is a well-established med and I've heard of it, but it can cause weight gain. I said yes, so does the one I'm on. I asked about the one that causes weight loss. I said that I know that is a stupid reason to choose one over the other, but I've already gained 30lb since this started and since we're just doing trial and error anyway, can I try the loss one instead? He said that's not a problem at all. This one is called Topiramate, and the reason it causes weight loss is that it apparently suppresses appetite. Of course it has a whole slough of other side effects too, but all the seizure meds do so that's neither here nor there. It's a crap shoot no matter which one I take.

He told me to start it right away at a half dose for a week, then a full dose, then decrease the levetiracetam (but I'll stay on both). So I started it last night.

And today I felt like shit all day.

The best word is woozy. Buzzed. Literally buzzing... like my body is vibrating. And my brain isn't quite functioning. But that's supposed to get better over time.

If I am sitting/laying down, I feel better, but if I'm up and about I feel worse. So I postponed my afternoon client meeting and hopefully will be ok for tomorrow's meetings. Have also had two very intense partials today (and three yesterday) so clearly that part hasn't been affected yet (but it takes time for the meds to start working, apparently).

Anyway.... I'm now into the combo-meds stage of the experimentation. This is more common than you'd think. And while the Topiramate has a whack of side effects, it does also get good ratings for efficacy, so I'm hopeful it will do the trick.  Wish me luck!